Tuesday, November 17, 2009

National Prematurity Awareness Day: Some Scars Never Fade

You know our story. My water broke when I was 24 weeks pregnant with my second son Bennett. Bennett did a kick-butt job of staying put, beyond all odds imaginable, until he decided at 30 weeks gestation that he'd had enough. He was born ten weeks early.

I've told you all before about the medical challenges Bennett has faced - the severe respiratory distress syndrome that later turned into bronchopulmonary dysplasia (chronic lung disease), his acute anemia, the severe calcium deficiency, and a slew of other more minor issues. So, what I want to tell you about today is the part of prematurity that most do not know about. The emotional scars. I thank the Lord daily that Bennett will not remember those very difficult times. But we do. His mommy, daddy, big brother, grandparents, aunts and uncles, and friends - those of use who peered in at him through the tiny hole of the isolette for weeks and weeks on end. Those of us who held our breaths, both in awe and fear. We all shed tears. That is our burden to carry, and gladly we shall, so that this precious little one never has to.

But there are some scars that do not fade.

The scars left when the neonatologist warns you merely minutes before you are wheeled into the operating room that your baby's lungs may be too compromised to survive. That the best case scenario she expects is that he will be a ventilator, and the worst case is that his lungs are too underdeveloped and brittle from the lack of amniotic fluid to be ventilated.


The scar that is left upon a mother who gets to see her newborn baby for only a few seconds before he is whisked away to a fate yet unknown. Who does not get to see her baby, aside from photographs, for the following 22 hours because neither he nor she is stable enough. Who does not get to hold her baby for the first time until he is a week old.

Scars that are left from the sight of one's child on life support, with countless wires and tubes coming out of them. Of not remembering what your child's face looks like, because you only caught a brief glimpse of it before it was covered up for weeks by tubes and tape. Of not knowing from day to day what will happen, and knowing that at any moment, things could turn for the worse.

The scars that are left on a family divided for months. From trying to explain to a big brother why he can only see his baby once a week for only a few minutes at a time, and that the baby is too sick to be touched. From trying to be brave for that big brother and assure him that everything will be ok, when you yourself aren't so sure you are telling the truth.
The scars that are left from doing the "preemie dance" for 9 long weeks - because just when things seem like they are getting better and you are making progress, your baby suffers a major set back. From going home night after night knowing that you are leaving your newborn baby alone in a box with strangers.
Scars that are left from finally getting to bring your baby home at 9 weeks old, but knowing that he still needs oxygen supplementation to breathe and a monitor to make sure he doesn't stop breathing. From the looks that strangers give you when they see your baby like this. And later on, the strange looks people give you when you tell them how old your child is, but he looks half his age.
The other day, I was looking at Bennett's heels, examining the physical scars that were left from the countless hundreds of cuts that were made to collect blood from him, sometimes hourly, while he was in the NICU. The scars are so faded now, that unless you knew they were there, you probably would not notice them. I am thankful that the physical scars are all but gone now. But, all too aware, a year and a half out, that some scars will never fade.
But, I want to tell you the joys too! Oh the JOY! Joys I never would have experienced in the same way if Bennett had been born a healthy full term child. Joys I didn't experience with nearly the same intensity when my first son Carter was born healthy and full-term.
The joy and relief we felt when we heard our son cry!!! upon birth!
The extreme joy that we felt when we finally got to hold our newborn baby a whole week after he was born!
The joy and awe of seeing one of God's real-life-living-breathing MIRACLES on this earth! And he's ours!
That intense and unyielding joy you can feel only upon the occassion of bringing your newborn baby into your home at 9 weeks old. Of finally being together as a family! Of not having to make those midnight drives to and from the hospital ever again!
The joy of taking him for a pulmonology appointment and seeing that he was saturating 99% oxygen on his own!
The joy we felt when he finally fit into a size 0-3 month outfit at 4 months old!
The JOY we felt when he smiled at us for the first time at 18 weeks old!!!! And the heightened joy and awareness of the gift of each successive milestone - rolling over, sitting up, standing, walking, the first word!
Oh, the joy that comes from looking at my happy and thriving toddler and knowing that I have been blessed beyond comprehension and measure.
So, please, let's fight together so that fewer babies have to endure such struggles and fewer families have to suffer so much pain. Pain that cuts deep and never completely goes away!!!

























4 comments:

  1. Girl, sometimes I just want to hug you. The scars on Micah's feet still drive me crazy. I have to remind myself that he doesn't remember...just I do. And that's good. And okay...I'm happy to bear his burdens as his mother. I'm HONORED to. We should seriously talk sometime. <3, Rebekah

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  2. HOWWWWWWWWWWW BEAUTIFUL.
    WHAT A TESTAMENT - SPEAKING TO ME DEEPLY ACTUALLY, THE STORY MAKES ME THINK OF GOD AND HIS SON AND THE SCARS HE BEARS FOR ME.
    BENNETT BEARS HIS SCARS, AND YOU AND THE FAMILY BEAR YOUR SCARS FOR OTHERS - FOR AWARENESS, EDUCATION, SUPPORT AND LOVE. WHAT A LITTLE ANGEL. SO GLAD TO HAVE PEOPLE LIKE U AND YOUR FAMILY OUT THERE WITH YOUR STORY AND YOUR SCARS - IF ANYTHING IT MAY BRING ME AND OTHERS CLOSER TO GOD. :)

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  3. Hi, saw your post on babycenter. I agree, the emotional scars are still there. Our son was in 12 days, but still to leave the hosptial without him is still haunting. Thank you so much for sharing and posting!

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  4. This is a great post and I have read lots in the past few days. I love that you tell it like it is (was) both the good and the bad. Thank you for posting for our Fight for Preemies event.

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